Truth in Medicine-Why Physicians Withhold Information

170222_JUR_doctorDuctTape.jpg.CROP.promo-xlarge2I have never spent much time in the healthcare system; being healthy I saw a primary care physician every few years and called it good. I never really noticed the patient/doctor relationship until being hospitalized in 2014.

After a 2 month stay from many complications of being diagnosed with an aneurysm and a collapsed valve I ended up with a chronic hospital infection that now lives on my graft, valve and sternal wires. Upon discussing a friend’s experience who also acquired a chronic infection, something really stood out. Neither of us were aware how serious the infection was until many months later when we were set up with an infectious disease doctor. I began to ask others who were living with chronic diseases and the a-ha moment finally came. Was this a conspiracy among physicians to keep their patients in the dark? Was the general public unaware of what they are living with after seeing a doctor? Were we just victims of poor bedside manner?

The physician-patient relationship is a complex one especially if we find a physician we are happy with. In the instance where they become your physician for life the relationship builds with trust and teamwork. This is one that most of us with chronic conditions hold. However, physicians, surgeons, and other hospital professionals are a fleeting relationship at best, so why are they not forthcoming on diagnoses, conditions, and care at time?

This has actually been a discussion for debate over the years. One of the basic principles of medicine is “do no harm”. How a physician takes this to heart may make a difference. Of course they want to heal us and not maliciously make us worse, but does the “do no harm” edict mean a patients mental well-being? If a patient is recovering and in a weakened state would it hurt them and hinders healing if you told them we found cancer? Many physicians think this is likely so. However, there may be other circumstances for these actions that may seem neglectful.

We are often times guilty of not being honest with our physicians. “ I just noticed this rash” really means you had it for weeks but now it bothers you. “I exercise regularly” likely means you walk to the mailbox every day. Along with this our physicians may have just come from a meeting where the hospital tells them “our infection rates are sky high” and they are told to downplay how serious it is to a patient. True and honest medicine is a tango at best.

Why do doctors Hold Back Bad News?

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There are several theories on why doctors do not want to and are bad on explaining bad news or the seriousness of a problem. One may be there are not trained in medical school on good communication. Medicine is a singular sport and teamwork is not pressed. Doctors often feel colleagues and fellow students want to “steal” techniques. Another may be constrictions on time. With all the computer charting and charting regulations they spend more time worrying about have they done the legal part correctly.  It also is obvious that in a hospital setting long term relationships cannot be built. A doctor, NP, or surgeon only sees you briefly and for a short time. This does not allow them to get to know a patient or family and lack of knowledge in do these people handle bad news well. Last but not least is a doctor like to have answers. If there are lack of therapies to treat the condition or disease they may not feel great about telling you “hey you are out if options and my hands are tied”.

Although doctors’ obligations of fidelity and promise keeping mean that they should be truthful to their patients regarding their conditions, sometimes, the desire to ‘protect patients from harm’ makes doctors less truthful with patients. Despite the argument that the motivation behind this is often well meant, “a conspiracy of silence usually results in a heightened state of fear, anxiety and confusion, not one of calm and equanimity.” It is more likely that misguided evasion or frank dishonesty may add considerably to a patient’s distress and prolong the necessary adjustment process thereby causing harm and violating the ethical principle of non-maleficence. The doctor-patient relationship, at its very essence, relies on honest communication. Lying to or misleading patients undermines the veracity of the individual doctor and casts serious doubt on the trustworthiness of the medical profession as a whole.

If I had known (in my case) how serious the Pseudomonas infection could be I would have been more eager to understand how the pathogen works and what could I do for myself to help offset side effects from the high dose Cipro that is taken for life. In the hospital all I was told was the infection was gone and a month of home infusion therapy would ensure that. Assuming (oh how we are wrong with that word) that all was done and my life would be normal, it was not until a month later sitting in an Infectious Disease doctor’s office, and wondering why, that I was finally told this infection was permanent. It took 4 visits to finally learn how it is permanent, and 2 years later was finally told (by much begging for the truth) that the Pseudomonas will work its way around the high dose I am on, he just does not know when, and I am out of options.

Some of us want the truth so we can adjust our lives to it. Physicians please! Get to know your patients enough to know if they can handle it or not.

 

 

 

 

 

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You Can Help Prevent Hospital Infections!

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We all know roughly 2 million people a year are infected during hospital stays. But did you know that hospital-acquired infections the nation’s eighth leading cause of death, just behind diabetes and just ahead of flu and pneumonia?

We at times feel helpless as patients when we are in a hospital bed. But if you have your wits about you and not sedated there are a few things you MUST do to help you stave off an infection.

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Insist on asking “Did you wash your hands”?  Ask everyone who enters your room whether they’ve used soap and water.  Alcohol-based hand sanitizer is not enough to destroy certain bacteria, such as the dangerous C. diff. Don’t hesitate to say: “I’m sorry, but I didn’t see you wash your hands. Would you mind doing it again?”

 

cl_arrowquadlumen_non-tunneled_central_line_m72Ask whether central lines or catheters can come out every day.  The longer they’re left  in place, the greater the infection risk. Bacteria can decide to grow and colonize.

 

 

fas076-2 Bring Your Own Sanitizer. Bring bleach wipes for bed rails, doorknobs, the phone, and the TV remote, all of which can harbor bacteria. And if your room looks dirty, ask that it be cleaned.

 

 

hospital-rankings-259x300 Check out your hospital of choice safety record. All hospitals have rankings on rates of infections. Check hospital rating sites or the CDC hospital “accidents” ranking. Infections fall under accidents.

 

 

advocate It cannot be stressed enough. Have an advocate! Whether it is a family member, friend, neighbor, Pastor, or a hospital assigned advocate it is very important to have someone help you speak up and speak for you when you are unable to. Just call and ask someone. This is the most important way to ensure proper care is given.

Poor Communication in Multidisciplinary Teams Hurts Patients

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I have been a patient in a major hospital system for going on three years now. My story about confusion and misunderstanding my outcome and procedures at times creates more procedures and likely adds to cost of care. In my example it started in the emergency room. After a serious bout with symptomatic A fib a CT revealed an aortic aneurysm. I was first seen by the ED cardiologist who said this was an operable sized aneurysm and I should be admitted. First I was kept overnight in the ED to be stabilized. The next morning the general internist in the ED came to me with discharge papers and said I should call the cardio thoracic surgeon listed on the form to set up an appointment. I had never been in the hospital before and assumed this was protocol. After calling the surgeons office I was given an appointment three weeks out. I had not realized the ED team had not communicated on what was to take place. Fearing the issue would get worse I started calling random cardio thoracic surgeons on the hospitals website. I finally got down to the G’s and the office said come right away. To my surprise the scan had also shown a collapsed aortic valve and this was never communicated to me.

Time after time I found while in the hospital one hand did not know what the other was doing. In final step-down I could not eat solid foods and expressing aggravation about this to my surgeon he set up a procedure to put some gel between my vocal chords as they were slightly separated. From the lengthy intubation he thought. I was put under, sent to an OR and woke up in my room hours later. I asked if it was successful and my surgeon stated they did not do it. It seems on my second intubation the respiratory team had ripped one of my vocal chords and not charted it or told anyone else on the team. My surgeon had no idea.

At first I thought I was alone in this but after talking to many patients with a complicated hospital history this was far more common than thought. Time and time again as in my own case I discovered doctors of different specialties did not really talk to each other when it came to having a mutual patient. The scary part is all of us confessed to receiving different diagnoses from different doctors. One even tries to cancel the other one out. There are several things that can start in training, even in medical school.

First a daily goals plan needs to be devised by the chief physician; this should be done at the first day of care if the team involves two or more disciplines. This list will help eliminate overruns of care and eliminate duplication of procedures or tests. This can also offer a way to divide duties and share tasks.

Structured or coordinated rounds are also a good way for teams to communicate and meet face to face to discuss care. One team can hand a patient off to another or they can meet at the same time. I know this can be tricky as physicians and specialists’ often have crazy schedules. A hospital system would have to look at census demographics and times of rounds to coordinate this carefully.

A total cultural change which requires skilled communication, true collaboration, effective decision making, appropriate staffing, meaningful recognition and authentic leadership, he added. The healthcare organization and individual team members share equal accountability for creating a collaborative culture. For example, the organization defines each team member’s accountability for collaboration and how unwillingness to collaborate will be addressed. It ensures unrestricted access to structured forums, such as ethics committees, and makes available the necessary time to resolve disputes. Each team member becomes as proficient in communication skills as in clinical skills. The team acts with a high level of integrity by giving power and respect to each person’s voice, integrating individual differences and resolving competing interests in order to safeguard each person’s contribution.

medical-school-teamwork

Another possibility can be training in teamwork. Med students may get this in undergrad programs depending on the degree but often being a physician is a solo venture in attitude and feeling. Teamwork can be taught in multiple ways either by seminars, group outings, or in a classroom setting.

If team members foster respect and collaboration; in the long run duplication on procedures or tests, incorrect tests being ordered and longer care due to errors will save any hospital in the long run with shorter patient stays and lower costs.. We need to answer this problem for the optimum outcome in patient satisfaction and subsequent recovery.

What Is Sepsis?

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Sepsis (or Septicemia) in basic terms is a bacterial infection in your bloodstream. You will hear doctors call it bacteremia) There are three defined stages to sepsis and you may graduate to septic shock rather quickly which can cause tissue damage, organ failure and then death.

 

To be diagnosed with sepsis, you must exhibit at least two of the following symptoms, plus a probable or confirmed infection:

  • Body temperature above 101 F (38.3 C) or chills
  • Heart rate higher than 90 beats a minute
  • Respiratory rate higher than 20 breaths a minute

Severe sepsis is when your diagnosis will be upgraded if you also exhibit at least one of the following signs and symptoms which indicate an organ may be failing:

  • Significantly decreased urine output
  • Abrupt change in mental status
  • Decrease in platelet count
  • Difficulty breathing
  • Abnormal heart pumping function
  • Abdominal pain

Septic shock will be diagnosed and, you must have the signs and symptoms of severe sepsis — plus extremely low blood pressure that doesn’t adequately respond to simple fluid replacement.

Per the CDC in the United States alone each year 2 million people acquire hospital infections. Of those 119,000 a year dies. Not all are from sepsis though as that number runs around 98,000 deaths. Permanent organ damage can occur in people who survive sepsis. Between 28% and 50% of patients with severe sepsis die from the infection in the hospital. This is a staggering statistic and we need to make more hospital patients aware of what Sepsis is and if caught soon it can be overcome.

Risk factors or those susceptible include people who:

  • Are very young or very old
  • Have a compromised immune system
  • Are already very sick, often in a hospital’s intensive care unit
  • Have wounds from surgery or injuries, such as burns
  • Have invasive devices, such as intravenous catheters or breathing tubes

Often times the bacteria that cause Sepsis are antibiotic resistant to some, and some are resistant to all antibiotics where others if in the system long enough can adapt to antibiotic resistance over a short period of time. Once Sepsis is diagnosed your doctor has to take a blood culture which will take at the least 48 hours to grow and get the bacteria identified so the proper antibiotic can be applied. Prior to knowledge of the bug the infectious disease physician will give you some broad spectrum antibiotics until it can be better targeted. They can take a “best guess” by the odor of the bacteria if pus has evolved or by smelling part of the culture taken. Some common odors for bacteria are:

 

Pseudomonas aeruginosa: Grape-like odor, sweet, fruity, smells like taco chips, tortillas or corn chips to some people
Staphylococcus:  Sweet, hay-like, earthy odor
Streptococcus: Sweet, cake-like, caramel, butterscotch odor
E Coli:  Floral/flowery odor

You can recover from Sepsis or septic shock; although with the latter you may have some organ damage. Many individuals recover without any residual dysfunction. Some sepsis survivors will have long-term recovery needs based on organ or tissue damage from the septic event. In the case of open heart surgery patients a debridement of the chest area will happen. If there is severe trauma to the extremities, amputation may be performed. Some patients have post-traumatic stress syndrome – a mental health condition – as a result of trauma from the sepsis event.

Sepsis is a medical emergency! If you are in the hospital already and you or your caretaker notice any of the symptoms get a nurse or doctor right away. Certain bacteria like Pseudomonas can kill within 80 hours of the initial infection. If you are at home call 911 immediately or go to your local emergency room.

Quorum Sensing is the New Frontier

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With the growth of ARM’s (antibiotic resistant microorganisms) it has become well known that the antibiotic shuffle of trying to fool them with different therapies is not working. Bugs are becoming stronger and cleverer. After all they have survived for billions of years and outnumber us.

It has been surmised since the 1960’s that bacterial cells “talk” to each other. J. Woodland Hastings was studying bioluminescence in the marine bacteria Vibrio fischeri. He and his post-doc, Kenneth Nealson, discovered that bacteria could communicate by secreting a small peptide.

They noticed that that the bacteria glowed in the dark but only “tuned on” when many were gathered around together. The surmised that they must be talking to each other and agreed to light up. This was named quorum sensing since they did it in a majority group.

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This technique has been passively studied as a fascination until recently. With the rise in the last few years of antibiotic resistant microbes scientists wondered if all bacteria talked to each other. Dr. Bonnie Bassler of Princeton’s Bassler Labs and her team have discovered the peptide molecules common bacteria use and have broken down the molecule chain to recreate a peptide that will confuse the cells. The artificial peptide is shaped differently and does not fit into the receptor and blocks communication. In bacteria cells give each other specific jobs. Some pass on new DNA to others who have figured out to battle a new antibiotic, while others build biofilm, and others gather food. The thought is if we can send out false information we will break the building blocks of pathogens so they die off.

This is great news for people with chronic infections where biofilm has formed or have weakened immune systems, or are allergies to antibiotics that fight their specific bug.

The bad news is research is stagnated. Big pharma is not interested in this research (to sound a bit like a conspiracy theorist- it does not pay to cure patients). They tried and deemed it cost ineffective and do not want to put research dollars into this. Some small startups have been trying to create a new peptide but for certain bacteria parts of the ingredients are only found in a rare plant that has limited numbers. One way to jump this hurdle is to create an artificial molecule which they are attempting but it takes time and money.

The federal government has declared 2017 the year that Zika and ARM’s are going to be front and center for concern. That said congress is loath to give up dollars for this for several reasons. We need to email and call our local representatives as well as sign petitions for funding. Many agencies go to Capitol Hill to fight and I am proud to say I will be joining the IDSA (Infectious Diseases Society of America) early in 2017 in talking to congress regarding the need for research dollars. Please consider advocating for this new and needed research.

Carbapenem-resistant Enterobacteriaceae in Healthcare Settings

CRE, which stands for carbapenem-resistant Enterobacteriaceae, are a family of germs that are difficult to treat because they have high levels of resistance to antibiotics. They are a new and rising super-bug.

CRE are Gram-negative bacteria that are resistant to the carbapenem class of antibiotics, considered the drugs of last resort for such infections. Healthy people usually do not get CRE infections – they usually happen to patients in hospitals, nursing homes, and other healthcare settings. Patients whose care requires devices like ventilators (breathing machines), urinary (bladder) catheters, or intravenous (vein) catheters, and patients who are taking long courses of certain antibiotics are most at risk for CRE infections.

They are commonly found almost everywhere in the world, often colonizing humans and animals living in or on humans and animals mucosal surfaces, gastrointestinal tracts, and on some areas on the skin. They can be passed around in a healthcare setting from feces, clothing, and medical instruments with symptoms being:

  • Fever and chills
  • Little or no energy
  • Loss of appetite
  • Nausea and vomiting
  • Cough or difficulty breathing
  • Painful or difficult urination
  • A rash or red, swollen skin with pus

Treatment of CRE infections is difficult. Surgery may be needed to drain an abscess (collection of fluid) or remove infected tissue. Some doctors may choose a combination of antibiotics that show some ability to kill or inhibit CRE bacteria from growing. Antibiotics such as aminoglycosides, polymyxins, fosfomycin, and temocillin have been used with some success to treat CRE infections. Infectious-disease experts should be consulted if an individual is diagnosed with a CRE infection.

Healthcare workers can help eliminate transmission by washing hands often, isolating patients with CRE, and ensuring bathrooms in patient rooms are clean as well as frequesnt gown and linen changes.

Death rates from CRE are 50 to 60%.

rt_cre_bacteria_jef_150219_16x9_992   CRE bacteria

Offsetting the Effects of Long Term Antibiotics

istock_000015566280_doubleLiving with an infectious disease does not always require antibiotics, but hospital acquired infections likely do. Some simple infections may require shorter term antibiotics, while Pseudomonas and others require lifelong antibiotics. When you are on a lifelong course there are actions you must take to help offset some of the damage and side effects antibiotics cause.

Antibiotics aid good bacteria in your system to turn bad. They can share DNA with other bacteria and the antibiotic will kill most of the good along with the bad leaving a large imbalance in your natural microbiome. Several ways you can aid in the balance:

 High fiber supplements

The good bacteria in your stomach feed on fiber, so eating a high fiber diet is necessary to keep them growing. Bad bacteria also use the same cling method so they can be more effectively be transported “out”. Eat as much as can be tolerated by your stomach, which will likely be sensitive, try to also include vegetables for added fiber, although you may need to boil or steam them, and possibly blend them into smoothies, to allow them to go down easier. Chia seeds and flax seeds are also good sources of added fiber, and you can add them to salads or blend them into drinks.

Take Probiotics

Since antibiotics kill off the good bacteria in your GI tract, you can limit this damage by keeping the probiotics coming in strong while you’re on your antibiotic, and preferably trying to take them at least 2-3 hours separately from the antibiotic. Probiotics are still going to take a pretty big hit if you’re on one of the more gut villainous antibiotics like Clindamycin or Ciprofloxacin. Saccharomyces Boulardii is one probiotic strain to look for that can stand up to the battle just a little bit better, but you’ll want to get on it before you start the antibiotic. This is not pleasant to discuss, but your GI tract is mostly going to be empty wasteland by the time the antibiotic has been in your system for several weeks. Start as early as you can. Keep in mind there are millions in the variety your gut needs so you may want to try several make ups.

Fermented foods naturally contain a high amount of probiotics, so in addition to kombucha and kefir, include things like sauerkraut, pickles, pickled beets, pickled turnips and carrots, and Kim Chi.

Drink lots of fluids

Antibiotics not only dehydrate you they can cause your kidneys a lot of damage and even failure. It is imperative that your physician monitor your kidney performance with blood tests that show your filtration rate and other markers. Antibiotics damage kidneys via oxidative stress which describes a condition in which cells produce chemically reactive oxygen molecules that damage the cell’s DNA and enzymes, as well as the membrane that encloses the cell. Some ways to prolong damage and maintain a semblance of kidney health are:

  • Avoid self-medication
  • While taking over-the-counter drugs, check labels for warnings
  • Avoid habituating yourself to particular medicines such as sleeping pills or painkillers. Instead follow a healthy lifestyle.
  • Long-term consumption of drugs should be only under supervision
  • Make sure you are not overusing drugs
  • Drink plenty of water and good fluids to flush out the toxins
  • Avoid taking painkillers during pregnancy
  • Avoid drinking alcohol or too much coffee
  • Absolutely avoid carbonated sodas

 

Stretches and Mild Exercises

Warnings on tendon damage and rupture apply to a class of antibiotics called fluoroquinolones, which Ciprofloxacin is one. How it damages tendons is by toxic pathways that destroy the cellular matrix of the tendon causing it to degrade. It is most common in the Achilles tendons but can happen in other tendons in the body such as hands and shoulders. The older you get the more your system naturally degenerates and the Cipro aids it by speeding up the process.

You need to avoid high impact exercise and concentrate more on walking and light weights for toning. If you develop tendonitis you can help by:

  • Doing squats to relieve heel pain
  • Bathing in warm water to ease pain
  • Doing gentle stretches for shoulders and hips (use resistance band)
  • Being cautious about activity

Antibiotics, especially long term and high dose, are not easy to live with. But, due to your infection you have little choice. Discuss side effects with your doctor and be proactive in researching how to best deal with the particular side affects you have. Everyone is different.

 

List of fluoroquinolone medications are

ciprofloxacin (Cipro)

gemifloxacin (Factive)

levofloxacin (Levaquin)

moxifloxacin (Avelox)

norfloxacin (Noroxin), and

ofloxacin (Floxin)